After my little vent yesterday I thought it would be good for me to repost this 2009 blog entry just to keep it in perspective.

Autism is a puzzle with more curves, corners and pieces than any of us know.

One of the hardest things for people with AS is empathy. Coupled with the inability to appropriately initiate social interactions, children with AS have little understanding of how their actions and words affect others. Most neuro-typical children struggle with it, but can be easily taught to imagine how someone else feels. AS kids can’t imagine that.

On the other hand, all relationships are reciprocal. So, those of us who interact with someone that has AS need to also be able to empathize with how THEY are feeling or seeing or why they are behaving the way they are behaving. Only, we can’t. We can’t imagine that.

Imagine that sounds are painful. The vacuum cleaner sounds like a fire alarm. The fire alarm sounds like a jet plane. The water gurgling through the radiator stops you from wanting to play in your room alone.

Imagine that being in a crowded room or restaurant makes you want to spin in circles and hide under the table. If someone strange sits near you, you won’t be able to finish the meal. You’d rather just make loud silly noises to make yourself feel better.

Imagine that only six or seven foods taste good to you. Maybe it’s not the taste…but they feel and smell safe, so you’ll eat them. Imagine that you could not try new foods, even if they are pretty ones, because you don’t know them.

Imagine that you can’t understand what people’s faces are saying. They get all twisted up, twitching, smiling, frowning all the time they are talking. They want you to look them in the eye, but if you do that you won’t be able to concentrate on what they are saying. It hurts to look someone in the eye. Sometimes you can’t hear the words because you are too busy trying to figure out the look on their face.

Imagine that collars, tags and zipper pockets make your skin itch. Your Mom bought PJs and the “out parts” of the sleeves are too tight on your wrists. Makes it hard to fall asleep.

Imagine that you couldn’t tell when someone didn’t want you to touch them anymore. You like touching people’s clothes or licking them or blowing on them or just getting as close as possible. Why won’t they let you do that? It’s how you tell someone you like them a lot. How else are you supposed to do it?

Imagine that you can’t answer open-ended questions without anxiety. So instead, it feels better to just say “AAAHHHH!!!!” Why does everyone want to know if I “like school” anyway? I don’t know.

Imagine that making changes or transitions from one thing to another is really, really hard for you. All you need is a little warning that something else is going to happen next…but most people won’t do that. Imagine that taking an alternate route home to avoid traffic would make your world spin out of orbit for a while and you’d cry a lot about it.

I’m tired. Not the sleepy kind of tired…or the exhausted kind of tired. My brain is tired. It hurts. So much going on right now…so much emotional crap being thrown at me from every conceivable place…well not “crap” but y’know.

Someone asked me yesterday if I was really glad that summer was here so that I could have my kids home with me. After I actually laughed out loud I replied, “Yes and no. I’m not a great stay-at-home mom.” Deep down the honest explanation would have been way too hard for her to understand and I didn’t feel like trying. Not everyone cares to know.

Colin has been off his meds for about three weeks. Due to, in part, the fact that he’s scheduled to see his Pedi for a med check and I always take him off a week ahead of time so that we can discuss the differences on/off the stimulants. Butttt….I had to cancel the appointment and am playing phone tag with the office to get a new appointment time. Meanwhile…Colin begins the “Big Spin”. The Spin that doesn’t end.

He exhausts me. Without meds, C is on a constant quest for stim. Tactile stim is his gig. While most mothers would die for the endless hugs and incessant kisses they just make me sad because I know why he’s doling them out. Him and Albert…the fearless stuffed dog who tells me more about Colin than Colin does. Albert goes absolutely freaking everywhere with us!!

“Albert wants a kiss”
“Albert is lonely, will you sleep with him?
“Albert will miss me, so can he ride in your car today while I’m away?”

Albert was at the petting zoo with us today for exactly nine minutes before I’d had enough of Albert needing to feed the ducks one pellet at a time. We decided Albert was tired and should nap in the car for awhile. Then I figured out that Albert is part of his tactile stim need. Once Albert was gone, C decided that putting the little duck food pellets in between his bare toes so that he had 8 pellets stuck in his own little webs was the new “good feeling”. I saw someone walk by and grin while he did that…like it was cute. Maybe to them…to me all I thought was “Please God. Not again.”

The most exhausting thing is the non-stop one-sided conversation. A diatribe on Mario or Sponge Bob I can handle about once a day. Right now…it’s constant. I’ve taken to telling him that he’s got three minutes to talk or he gets to tell me three facts about whatever the current obsession is. (It’s a new rule…should work right?) And then my heart breaks because I realize that we’ve talked all day long with each other and not once has he initiated a conversation that had anything to do with anyone else’s interests or feelings. He’s just researching the facts, Ma’am.

I try to find the fun and crazy things about this Asperger’s Beast most of the time. There are many of them…we giggle a lot and love this little man to death.

But tonight I’m tired. My brain hurts. I need a little bit of a vent…thank you very much.

School starts in two weeks. That means I have only one more true week of summer vacation. “Practice Week” begins on Monday the 23rd. Reacquainting Colin with a more rigid routine is not something I’m looking forward to, but it has to be done. When summer started, I told myself that keeping him in his normal morning routine (get dressed, eat breakfast, brush teeth, take meds before tv or games) would be critical. Also, adhering to a regular bedtime would make it easier on him so he wouldn’t be tired during the day…which brings Tigger out in full force. Did any of that happen? Um…no. The only routine activity he’s clung to is reading the Sunday comics. “I only like the Sunday ones because they have color. The ones on Monday, Tuesday, Wednesday, Thursday, Friday and Saturday are not in color and that means I don’t like them. They don’t make sense without the color.”

I think it took all of two days for me to sink into the joy of sleeping in and letting the kids get up without me. Colin won’t walk down the hall to the living room alone if no one is out there…so on mornings that he’s up first…he crawls in bed with me and turns the tv on. Actually, he doesn’t crawl in. He does this wild sort of run-jump-plop-scramble maneuver. Then, because he hasn’t had his meds yet, the stimming begins. That involves rubbing Mommy’s arms, playing with my elbows, touching my legs and putting his face two inches away from mine and asking “When are you getting up?” Not all that relaxing for me, but still.

The dumbest thing I did was not enforce his morning routine of getting dressed before anything else happens. By the end of last school year, Colin was finally at the place where he would get his clothing, socks and shoes on independently. Then, eat breakfast…brush teeth and THEN he could watch tv if time allowed. Guess what…he is still in his pjs as I write and it’s 10:30 a.m. So, Practice Week is gonna be tough. Adding to the stress is a new bus schedule, new bus route and new bus number. When I told Colin about this change…”I’m STUPIFIED!!”…was his only response, followed by flapping and spinning. Ugh.

Clearly I am not winning the Aspie Mother of the Year Award. But guess what? We had a fun summer! We stayed up late, swam in the dark, chased fireflies and ate lunch on the trampoline. We laughed a lot and grew a lot. So, my last official week of summer will be more of the same. I promise.

And only when I’m all happy and tired out from playing will I get back to filling out forms, scheduling therapies, IEP meetings, TSS set-up and enforcing routine. For now, we’re all just having too much fun…and I’m fine with that.

I have noticed Colin initiating more spontaneous conversation lately that FINALLY has nothing to do with Mario Brothers. A few weeks ago, it seemed like a little switch went on and we’ve been having quite long and complicated conversations that revolve around him wanting to know something about life.

Tonight’s conversation, however, made me weak in the knees.

Sitting by the pool, warming up after an after-dinner-swim. Erin’s still swimming and he’s watching her. He’s wearing his swim shorts, swim shirt and ever-present life vest. Wrapped in a colorful striped towel with his little purple lips….

Him: “Mommy…I think I’d like to be a girl.”
Me: “Why?”
Him: “Because girls are pretty.”
Me: “But boys are handsome.”
Him: “I’m quite tired of being handsome. I was hoping that I’d be a girl.”
Me: “You’re definitely a boy buddy.”
Him: Big sigh.

One minute passes silently.

Him: “I think you’re going to have another baby and it will be a girl.”
Me: “OH NO! We are definately NOT having any more babies.”
Him: “Well, you should have had two babies the last time…me and a girl.”

Another minute passes. By now, Erin’s out of the pool and we’re wrapping up and heading in.

Him: “By the way, was Erin a baby?”
Me: “Yes, everyone starts life as a baby. Liam was a baby too.”
Him: Smacks forehead, throws head back…”What the heck?! You had THREE babies! All at the same time?!”
Me: “No, at different times.”
Him: “Was I the first one?”
Me: “No, Liam was first…that’s why he’s oldest. You were last, that’s why you’re youngest.”

He thinks for a minute (by now he’s stripped totally naked, cause he like to be that way) and as we walk towards the pool fence door he asked THE QUESTION.

Him: “Mommy, how does the doctor get the baby to come out of the Mommy?”
Me: gulp…weak knees. “Um…well…you know how girls are the only ones that can have babies, right? And you know that girls have vaginas…remember, it’s near the place that their pee comes from. Well, babies also come from the vagina.”
Him: “What?! But it’s so small there.”
Me: “It gets bigger…trust me!”

Erin: “OH MY GOD MOM!!!”
Me: “I have to tell him the truth Erin.”

Him: “But I’ve only ever seen hair there. Isn’t that where your Penis (yes, emphasis added) is supposed to be?”

Somehow that ended it…and now I sit wondering when he’s going to ask me HOW the baby gets in there…right now he’s concerned with how it gets out.

I would like a word with the Crayola Company. Frankly, any maker of crayons, markers or colored pencils. I’d like to invite them to my home to observe the frustration Colin experiences when he’s required to do a coloring activity. Why? Because not one crayon in the box is labelled “Red”, “Blue”, “Green”, “Yellow”, “Brown”…you get the idea.

Colin doesn’t like to color for fun. His preferred style is to scribble with a Black crayon. However, when homework requires him to “Color the square shapes red”, for example, he’s more than willing. It’s required, therefore it’s a rule and he must follow it. (One benefit of his typical AS personality.) Because his fine motor skills are diminished it takes a LONG time to get the coloring to stay within the lines…but he’s meticulous in that task. What would take a neuro-typical child three minutes to complete takes Colin ten. IF he can find the right colored crayon to fit the job.

This is where my gripe with those crayon companies comes in.

Colin’s literal brain can’t use “Posh Pink”, “Rusty Brown”, “Blue Green” or “Amber Yellow” when his instructions call for pink, brown, green or yellow crayons. Even “Light Blue” won’t work if the required color is simply BLUE. We’re working through it … like we’re working through everything, but it’s not easy. He feels like he’s not doing his homework right.

I do love all the beautiful colors in a great big box of crayons…it’s just not Aspie friendly and I’ll be darned if I can find a normal box (other than with the kids meals at Applebee’s) of crayons without the extra hues thrown in.

Yesterday, I took Colin and his best friend (Yeah! he has one!) to the petting zoo and then for ice cream. Colin ordered his typical “Green” ice cream (read mint-choco-chip) and I got strawberry. He looked at my dish and uncharacteristically ventured outside his zone and asked if he could taste my flavor. He liked it! Cool…

HIM: “Mom, next time we come here I will ask the persons with the ice cream for a medium cup of strawberry…and then the time after that…which will be two times from now…which is the third time…I’m going to try the raspberry ice cream in a medium bowl.”

Well, okay I thought.

Later that evening he repeated this agenda to Liam at the kitchen counter while they ate dinner.

Colin: “Liam, I had green ice cream today…next time I go to the petting zoo I am going to have strawberry…I tried it and I think I like it…then the third time I go I will sample raspberry.”

Liam: “Cool buddy. It’s good to try new things. You want to try raspberry huh?”

Colin: “Yes, Raspberry is darker than Red. I don’t know what color Raspberry really is, but if I taste it, maybe I can find out and then I’ll know.”

There ya go, Crayola…just flavor the off-the-wall hues in the box and we’ll be fine!

Beautiful, beautiful, beautiful day! The last remnants of snow are melting away and the sun is shining. Once again, I awoke to birds singing outside my window…a sure sign of Spring. My iris and daylilies are poking their noses through the dirt and I spy buds on the lilac. My impatience at the cold and snow is turning into impatience at having to wait a few more weeks before I can begin to dig in the dirt.

I’ve been in a little funk lately. Nothing major, just minor exhaustion and frustration aimed at the hurdles and hoops I’m jumping through to get proper support for the C man. I cannot understand why I must apply for Medical Assistance (the application for which is daunting on its on) before being able to find full-time classroom support from an ouside agency. They will also be providing the wrap services of home help and hooking us up with the right therapists.

My mind’s eye is seeing the three more evaluations by psychologists, speech therapist, occupational therapists, psychiatrist…and the mountains of paperwork involved.

Any whoo…last night I sat in the living room with all these reports, applications and letters, feeling rather overwhelmed and a bit blue.

So, I pulled up my You Tube account and found my favorite video to watch. Nothing like a dose of The Blues to drive the blues away…and with that I will leave you with my favorite blues pianist and her improvisational skills…

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Why “Divine Graffiti?”

I wait patiently each day to see what Divine Graffiti will appear on the walls of my life. Life has a way of imparting wisdom to us through the experiences of each day as well as smacking us over the head with insight and reminders that I must remain present. Through my writing, I learn more about myself and about what is in store for me and mine.

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You'll have to stand on the side of a mountain for a long time before a roast duck flies in---ancient Cantonese Proverb

DISCLAIMER

I am not responsible for everything I write here. It is simply my mind running away with me. I tend to speak before I think and write before my fingers have had a chance to ask permission!